Going to College
(Corina Duyn
5-9-’12)
Fourteen years
ago I was in the process of applying to go to college to study Art Therapy.
However, I became ill with the debilitating illness M.E./CFS and had to forgo
on the idea. What I didn’t give up on was the wish to study.
A quick tour of
the fourteen years that have passed since: The first few years were spend more
or less housebound due to the severity of the illness and resulting disability.
To be able to live at home, on my own, I eventually received support through
the provision of home-help, seven days a week, twice a day. A life saviour, so
were the friends that supported me and kept me informed of the life that went
on behind the four walls of my house and garden.
Art and writing
became another lifeline to help me deal with the limitations and changing
lifestyle I was experiencing. I drew eggs, painted birds, wrote in my notebooks
about a spider in my bedroom, which was as inactive as I was. Art and writing
‘informed’ me how I could make the most of what I had, to value the environment
I was living in. I was able to have a life on paper. In a way I did my own Art
Therapy study!
The wish to
study continued though, and years later I settled for a correspondence course
with the Open College of the Arts. This allowed me to study when I was able,
even if this meant just one hour a week. I chose Understanding Western Art. It
took me two years instead of the 7 months suggested to complete the course, but
it was a proud day when I received my certificate. Studying gave me a purpose
to my day. To my week. To my life.
Encouraged by
local librarian and the Arts Officer, I translated my art and writing into my
first book Hatched. Again
a proud moment in my life lived with illness.
Writing became
more and more important in my life, as much a tool to help me make sense to my
life, as it was a way to use my creative mind. It was an activity I could do
with the limited energy I had. All I needed was a pen and paper. I could write
lying down needs be. These thoughts resulted into undertaking another course:
Starting to Write. I loved it. Again the course took me longer than average. I
did it and received very good marks for my efforts. One of my stories won
runner up prize at the IWA Writing competition in 2010.
But.
Correspondence courses are solitary
activities. I longed to be part of a group to fill the need for social contact.
To be part of society. A big aspect of living with M.E. is, in my personal
case, that I am very limited in my energy and mobility. This impacts hugely on
how much I can do outside of my home.
Going to college stayed a wish. A big
wish.
For about a decade I had requested if it
would be possible to partake in one class as part of the VEC Art and Design
course. For me this would mean a daytime course, in which I could learn about
art hands on, be taught, be part of a group and learn together. It would get me
out of the house at least once a week, and not just for hospital appointments…
It wasn’t to be. You had to either become a full-time student, or not at all.
After a while I gave up asking, because every summer I got upset of hearing of
people going back to school. Studying. Every September I felt left out. I know
that this is a very subjective observation, because of course not everyone is going to college…
In 2011 however, I attended an
information day here in town about education and health. I talked with
representatives of the VEC, and with guidance councilors and stated my case
again: the wish to attend one class.
A few months later I had an interview
with the VEC. I was pleased to see that the building had been adapted for
wheelchair use. There was a ramp and an elevator to the second floor. The
course coordinator and a guidance councilor were present at this interview. I
felt understood and was told I was not the only person with this request.
‘Good’, I thought. I felt elated to be listened to and understood. A few weeks
later I received a letter from the guidance councilor that the course
coordinator had confirmed a place for me. I would start a weaving class, the
starting date would be confirmed later. Thrilled! I was going to college! That
is was only part time- every second week for one afternoon did not dampen this
excitement. Not at all.
But…
I heard from a teacher friend that the
courses about were about to start and she looked forward to seeing me in
college. I hadn’t heard anything from the college since that letter of
confirmation. When I rang, I was told that more full-time students had signed
up for the course and there was now no room to accommodate me.
I felt gutted.
Pushed aside.
My teacher friend spoke with the weaving
teacher what had happened. She had no problem adding me to the class. In the
end I was given a chance to fulfill my dream to study- but it was made clear to
me by the coordinator that I was there as a ‘favour’ as an ‘extra’. This hurts, to be honest, but
I didn’t let it stop me from attending class.
I loved the course. I loved going to
college, being with other creative minds, learning a new skill, and finding
that I absolutely loved weaving. I received very high marks for my work and
portfolio. At the end of the school year I asked the coordinator if there would
be a place for me to continue the course for the second year. ‘We’ll see. I am
not sure.’
No contact was made by the VEC to say
when this years course was to start again, and if I did or did not have a place
to continue the course. An oversight perhaps?
One point that stayed on my mind in all
this was, why make a building
accessible for disabled people, but not the courses.
Having attended this college for one
year, every second week for one afternoon, when able, made me much more
confidence that I can
go to college and study.
During the summer I kept coming across a
Continuing Adult Education course in UCC: Disability Studies. It caught my eye.
It caught my imagination. Here is a course, which might just help me to use my
writing in a more focused way. I know a thing or two about living with a
disability. I have experienced first hand how society views a person with
impairment. My own personal experiences and those from the time I worked as a
palliative care nurse and social care worker with people with learning
difficulties.
A long telephone conversation with the
course coordinator from UCC fueled my enthusiasm for this field of study. I
could do this. Couldn’t I?
I place was reserved for me to give me
time to sort out the financial and practical issues surrounding this (big)
decision.
Finance: I learned that there is only
financial assistance available if one attends a full time course.
It is unlikely I will ever be well enough
to study full time. So, I had to be creative in finding ways to fund this new
direction. I contacted various agencies and disability support groups, and
researched student finance in great detail. I believe that this course could
help me to play an active role in society, within the restriction of my
illness/impairment, and possibly give me some form of income in the future,
maybe from writing articles. Yet, like the correspondence course I have to
finance this route myself. Society/ Government has not looked outside the box
to aid all people who
would like to make a contribution to society on their path. This is not a
recession related issue. No facilities for people with a disability only able
to attend part-time college were made during the so-called Boom-Years.
I was delighted to receive likely support
towards fees from FAS, however this was put in doubt yesterday. There is only
funding available via this route up to FETAC Level 6, According the Department
of Social Protection, this was not clear on the application made my FAS on my
behalf. Requests for clarifications were made to the college by FAS but so far
no clarity have been given. I hope these issues will be resolved with a positive
outcome. Without this funding, about half of the course fee for one year, it is
very unlikely I will be able to afford this study. If I do receive this
funding, than it is only for this first course year. How I will finance
studying next year? No idea.
Of course it is not just the college fees
that I have to find to finance this study.
I need physically to get to college. I am
unable to drive there. Although I qualify for Free Travel, there is no public
transport from my town. I need to ask a driver to bring me to Cork, or to a bus
stop half hour away from here. Or hire a taxi to and from the bus stop.
To be able for me to attend the night
class, I need to stay in Cork for the day and night. I would have to rest
before the class commences and travel back home the following day.
The UCC Disability Support Officer I met
last month was very helpful in supporting my wish to study. Transport would be
organized to collect me, and bring me back, to my room I will be renting for
the duration of the college year. Also I will receive help with practical
issues in college, like the use of the library. This is so heartwarming. I felt
supported. To be able to receive this support, I need a letter from my
consultant to state my disability/illness. I requested this on the same day of
the meeting. No letter has been forwarded as yet.
No letter. No support.
On a practical note: I use a mobility
scooter to travel any distance greater that a few minutes walk. Over the years
I have bought my own scooters as the health board wouldn’t fund one. Their
reasoning is that I am ambulant.
I can walk. Years ago I was told by the Occupational Therapist (O.T.) ‘it might
make me lazy to use a motorized aid…’ This was the general view of the HSE, he
told me. That my freedom to move around ends at the end of the street, did not
seem to make any difference. Without the scooter, I will not be able to partake
in society, to do my own shopping, to go to town and meet friends. (The Mission
statement from HSE regarding disability: 6. To help people with disabilities
to achieve their full potential including living as independently as possible.). Another section of the HSE is of the
understanding that I am not able to walk, as they awarded me so-called Primary
Medical Cert, a cert very difficult to obtain, as the criteria are very strict
indeed. So one HSE department suggests I can walk, the other does not. I have been
given manual wheelchairs over the years, but am unable to propel the wheels for
anytime longer than a few minutes. I need someone to push my chair, which again
limits my independence.
My scooter needs maintenance or
replacement. The use of a working scooter plays major part in me being able to
attend college in UCC.
In April of this year a request was made
by the Public Health Nurse to the O.T. for me to be assessed again. She made a
new request in July stating the wish to attend college and need for a motorized
mobility aid. I have not yet received this assessment. It is now September.
College is about to start in 3 weeks.
The O.T. did ring yesterday, on request
of the Public Health Nurse. ‘We can not do maintenance on your scooter, because
you bought it yourself….’ I stated my case again and was told that my file will
be looked at in 2 to three months…
I am fully aware that my case is not
unique, that there are people with a disability/ illness that have much bigger
issues to overcome, like the current decision by the Government/HSE to cut
Personal Assistant hours for the Disabled. (Have they any idea?). I am so proud
of the people affected who protested at Government Buildings overnight and had
this decision reversed.
My story is only a fraction of what is
happening- or is not happening- in the world of people with a disability. I
believe I can use my voice to add to the debate. I believe that this course in
Disability Studies, will aid me to be part of society again. It will fulfill my
fourteen year-long dream to go to college. My life has changed utterly since
that time, but I have come to terms with the fact that I more than likely will
have M.E. affecting my life in a very profound way for the rest of my life. I
have never given up on life. I have created a good life within the restrictions
put upon me. A life of creativity which will always be part of me. Right now
though, I am at a crossroads, a major one. Can society: the O.T. (scooter),
Consultant (letter to gain support in college), Social Welfare/Government
(finance), help me to take this new path?
I am not trying to argue that just
because I have and illness/disability that all my needs need to be met, that
all study should be fully funded. What I am trying to argue is that society
could at least meet me half way, and not put up any further unnecessary road
blocks.
* I rang to O.T. to suggest that
maybe I can meet him at the hospital instead of waiting for a further few
months for a home visit. This proved to be no problem at all. Why was this not
suggested by the O.T.?
